Rationing Care at the Beginning of Life?

Oct. 29, 2009

By JOSEPH BROWNSTEINABC News Medical Unit

In the course of the debate over health care reform, some of the political rhetoric has focused on "rationing" and the idea of how much money can or should be spent on someone at the end of his or her life. But as care evolves, similar debates may someday surround how much can be spent at life's beginning.

Few cases illustrate this as starkly as a baby born prematurely at 21 weeks and five days in Britain last month, who died as doctors declined to resuscitate him. Sarah Capewell, the mother of the deceased infant, started Justice for Jayden, a bid to change the guidelines for early preterm babies in the United Kingdom.

The doctors in the case were following guidelines that establish viability for babies in the U.K. at 22 weeks. The case has been seized upon by some opponents of nationalized health care in the United States as a reason to avoid it, sparking fears that inevitably "rationing" will mean rationing at both the end and the beginning of life.

Capewell did not respond to a request for comment from ABC News.

To be sure, doctors contacted by ABC News were unanimous in their assessment that Jayden would almost certainly not have survived, even with resuscitation.

"The probability of survival at 22 weeks is effectively zero," said Dr. F. Sessions Cole, director of the division of newborn medicine at Washington University in St. Louis.

The youngest surviving baby born in the United States was Amillia Taylor, born in 2006 after 21 weeks and six days, but as it was noted at the time, because she was conceived via in vitro fertilization, her actual age was closer to 23 weeks.

But doctors say making determinations of age and viability are not an exact science. Most babies are born naturally, and so, an exact determination of fetal age often cannot be made, and age does not necessarily tell a doctor exactly how high-functioning a baby will be, particularly since only a few weeks separate a baby who cannot breathe on his or her own from one who can.

"When you have a regular pregnancy, you don't know exactly what the implantation [date] is," said Dr. Ian Holzman, chief of the division of newborn medicine at the Mount Sinai School of Medicine. "It's always an issue when we counsel patients prenatally. Unless we know for sure the date of implantation, the baby may be a little more mature than we think."

"Size is part of the issue here, and speed of development," said Arthur Caplan, director of the center for bioethics at the University of Pennsylvania.

At 21 weeks, he said, a baby usually doesn't have much in the way of lungs, and, therefore, cannot breathe even with assistance from a ventilator.

"There's no rule here about 21 weeks, 22 weeks, 23 weeks, you've got to take a look at the baby," he said.

When Reality Trumps Technology

So, in the case of the very premature, the realities of development will trump medical science.

"At that gestational age, the guidelines are probably irrelevant because it's physically impossible to treat," said Dr. John Lantos, a professor of pediatrics and associate director of the MacLean Center for clinical medical ethics at the University of Chicago, since the baby's windpipe cannot be put up to a ventilator.

"It's not so much a moral decision about whether to treat, it's more about the limits of technology," he said.

While he doesn't believe Jayden would have survived, Cole said he still feels Capewell was wronged.

"I am sympathetic with this family because I agree with them that these kinds of very difficult decisions need to be [made with the parents]," he said. "Every one of these decisions is shrouded by the biologic uncertainty of both the dates…and how mature the baby's lungs are going to be."

And Lantos asserted that most parents would feel the same way Capewell did.

"If you ask parents, 'do you want your baby to be resuscitated regardless of birth weight or gestational age?' Ninety percent of parents say, yes," said Lantos, citing a 2001 study in the medical journal Pediatrics that looked at the issue.

More Than Survival

So how much energy and resources should doctors expend to save a newborn when it is a futile case?

Guidelines for extremely premature babies do not exist in the U.S. presently as they do in the U.K. "Guidelines are general guidelines, and we don't have laws about it," said Holzman. "In the United States now, generally, in most centers, under 23 weeks most neonatologists…do not aggressively attempt to resuscitate and save babies that small."

Between 23 and 25 weeks, those decisions are typically made with the doctors and the parents.

"There's not a rule, but local practice," he said.

But very premature babies face a number of obstacles beyond mere survival.

"The concern in the smallest of babies is that the risk for multiple developmental disabilities and handicaps becomes so high that it might come within the parents' prerogative not to be aggressive," said Holzman. "The totality of the disabilities becomes somewhat concerning between cerebral palsy, mental retardation, deafness, blindness, that we're not all of one mind yet as to what the right thing to do is."

He also noted that another reason for the importance of a parent's involvement is that different parents will have different attitudes toward raising a child with special needs.

"Many appropriately say, 'I'm happy with whatever child I'm given, no matter how they are,'" he said. "I counsel people trying to have them understand the wide range of possibilities. There are families who end up feeling their lives are enriched by having a special needs child, and there are other families who can't imagine their life like that. And I try to figure out who they are."

Frontiers of Survival

For now, it seems that 22 weeks is around the earliest date at which a baby will survive, although Caplan noted that "if you can find some way to allow the lungs to develop prior to their being there, then you're going to push that frontier back."

But when it comes to national guidelines and rationing of care for newborns around that age, doctors say they are unlikely in the U.S. (Babies after 26 weeks almost always need to be resuscitated, as per a set of federal laws known as the Baby Doe laws.)

For one thing, rationing would have little economic effect.

In 2005, according to the Institute of Medicine, the total of health care costs for all preterm babies born in the United States was $26 billion.

"In the overall scheme of things, the entire expenditures on neonatal intensive care are rounding errors on national expenditures," said Lantos. "It wouldn't be a good place to start if we're looking at cost containment."

And this figure represents a total -- not just those babies who were born at the edge of viability.

"We're talking 1 percent of national health expenditures of all babies," said Lantos. "Ninety-nine percent of babies are not in this domain of moral controversy. If I were advising Congress, and they were given the power to start rationing, I'd start with old people [who are terminal]."

But even beyond that, there is little to suggest the public would accept it.

"I think babies represent hope, they represent the future, and because they do, because babies are very resilient," said Cole. "I think people are less likely to say that resources invested in a baby's survival are a mistake than they are to say resources invested in a very old person's survival are a mistake.

"I think it's possible people will talk about this, but I'm optimistic that because of the number of resources spent on end of life care for adults and the smaller amount spent [on newborns], it's unlikely that babies will be a major part of the discussion about curtailing resources at the end of life."

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